Life, Gained: Walter Styer’s CAR T Story

By: Carol R. Cool

Walter Styer greeted me and then excused himself to turn off the water irrigating his garden. Walter spends most days outdoors. When he isn’t still working at the family business, he fills his days tending his half acre filled with string beans, zucchini, corn, and tomatoes.

And his life is filled with family. As we sat together with his wife, Sarah, and daughter Carole in the Styers’ home in Downingtown, Pa., Walter, 89, arose twice to receive phone calls from his granddaughters.

Walter has been able to enjoy this active life for the past 11 years thanks only to the experimental immunotherapy treatment he and his family call a miracle. 

In 2012, after four years of treatment for chronic lymphocytic leukemia (CLL), Walter’s oncologist told him he was “running out of bullets.” Then his son Craig read an article about CAR T (chimeric antigen receptor T-cell) therapy in a clinical trial led by David Porter, MD, at Penn Medicine’s Abramson Cancer Center (ACC). 

CAR T therapy engineers a patient’s own T cells, a type of white blood cell that fights infection. T cells are extracted from the patient and reprogrammed with special receptors that will attach to specific cancer cells and kill them. The CAR T cells are infused back into the patient.

Walter, his family, and even his oncologist worried that being 78 years old would prohibit his participation in the study. But the ACC team assuaged their fears. “We were so early in the trial, we had no idea if age impacted outcomes,” said Porter, “so we didn’t think age should preclude Walter.” 

In June 2012, Walter received his first infusion of CAR T cells, making him the 10th patient in the immunotherapy trial. Walter experienced the high fevers that were a sign his genetically modified T cells were being activated. Unfortunately, follow-up tests showed the cancer was still present, and the CAR T cells were not. 

Walter, feeling he had little to lose and not ready to give up, received a second infusion in August. “I know it’s not very scientific,” said Carole, “but we were looking for a Pac-Man-like thing where the CAR T cells are gobbling up the cancer cells.” But follow-ups found no CAR T cells circulating in Walter’s blood. 

“We recognized positive results were unlikely now. It had been 52 days, and for most patients, this treatment had worked in the first few weeks if it was going to work,” says Carole. “As we drove home, we encouraged ourselves by singing our favorite hymns.”

Two days later, Walter was admitted to his local hospital with fevers. Additional testing after being transferred to Penn Medicine made it clear the CAR T cells were now growing and killing his leukemia. His swollen lymph nodes and tumor masses would all eventually disappear. 

Thanks to the clinical trial Walter participated in, thousands of families around the world are receiving a similar miracle. The CAR T treatment developed at Penn received U.S. Food and Drug Administration (FDA) approval in 2017, five years after Walter's treatment, thanks to the evidence from patients like him who volunteered to help study a then-experimental treatment. Now marketed by Novartis as Kymriah (tisagenlecleucel), the drug is curing previously incurable leukemia and lymphoma. It was the first of six now-approved CAR T therapies available for patients outside of clinical trials.

“Walter was truly a pioneer,” said Porter. “This trial sparked an entirely new field of cancer medicine.”

Lots of Life Left

Cancer-free, Walter continues living a life filled with the things important to him—his family and his faith. 

“I’ve been so blessed to be in the study,” says Walter, “and to enjoy 68 years of marriage with Sarah.” These past 11 years, they’ve celebrated the weddings of grandchildren, attended graduations, and welcomed 11 great-grandchildren. This year, Walter taught one of his great-granddaughters how to ride a two-wheeled bike, just as he had patiently taught her mother and grandmother before her. 

Walter’s mornings start with Bible reading and prayer. After breakfast he drives to the family propane business. There, he sorts the mail and handles any needed tasks. “I don’t like to give up anything,” Walter said. “I still have my commercial driver’s license (CDL).” (He did give up his permit to transmit hazardous materials in 2021.)

And of course, there is the garden. “We give produce to people at our church and our neighbors,” said Walter, “whatever to whomever.”

In the summer months, Walter maintains the family pool and mows nine-and-a-half acres across his own property and that of three of his children. Every fall, he drives the hayride tractor at his family’s harvest party. Over the years, Porter and others from Walter’s Penn Medicine team have accepted the invitation to join the fun.

“I am most grateful to have had the opportunity to participate in this study,” says Walter. “Because of it, I’ve gained life—a normal, active life.”

 

An Age of Immunotherapies: Related Stories

Building on the Body’s Wisdom: Treatments that manipulate or repair the immune system are becoming more commonplace.

The Immunotherapy Revolution for Autoimmune Diseases: With a deeper understanding of the immune system, there are growing possibilities to selectively turn down only the parts that malfunction—with hopes to someday cure these conditions.

CAR T for Solid Tumors: Scientists are still learning how to help CAR T cells evade the body’s defenses so they can effectively treat cancers in the breast, brain, lungs, pancreas, and other organs.

Cancer Interception: Cancer vaccines are a form of immune therapy under investigation at Penn, part of a growing effort to intercept cancer before abnormal cells become malignant. (From the Spring 2023 issue of Penn Medicine magazine)

Energizing the Immune Army: A phenomenon known as “T cell exhaustion” has stymied some efforts to develop powerful immune-based therapies. E. John Wherry, PhD, describes how researchers are learning to manipulate this complex process.